Thursday, March 30, 2017

I've said this before, but every time I think I have experienced every possible symptom that ME/CFS can throw at me, a new one arises that I would have never expected.

Starting on Monday of this week, I descended into a crash. Most of the symptoms of this crash have been typical for me. It is clearly a body-wide inflammation event of some kind. First, my energy takes a dive -- that's a given. Then, I experience upper respiratory inflammation. This comes in the form of three symptoms which, for me, almost always go together: shortness of breath, post-nasal drip, and an itchiness in my nose which sometimes results in sneezing. (This whole triad seems suspiciously allergic in nature, but allergy tests have never shown anything significant.) Some crashes stop there for me. It's not the worst kind of crash if it "only" involves a dip in energy and the upper respiratory symptoms.

But when a crash gets worse, I usually also get dizziness upon standing and peripheral neuropathy (my hands become uncoordinated and slightly numb.) Usually when the crash hits this stage, I also experience tachycardia and a feeling of pressure in the skull (like brain swelling). I have that now as well.

But this time, in addition to the numbness in the hands, it has actually progressed to pain in the hands, especially in the finger tips. It hurts to type this post. It hurts to do almost anything that I typically do with my hands: Open a bottle, button a shirt, wash my hands.

Starting about a year ago, I noticed that whenever I washed my hands, the act of rubbing my hands together produced an uncomfortable sensation; almost pain, but not quite. It was a minor discomfort but one of those things that registers with a "hmm, that's odd," before forgetting about it.

Now, with this current crash, my finger tips have become painful to the touch, and the palms have become extremely sensitive. Now when I rub the palms together while washing, it actually hurts. It's much more than discomfort now.

I searched the Internet and found very little about finger pain in ME/CFS. There were a few other people noting the symptom on various message board threads (e.g. 1, 2), but nothing about what causes it or what can be done to treat it. This is frustrating.

Please, if anyone knows what can be done about this, or where I can learn more about the cause or management of this symptom, please leave a comment below. If/when I learn more about it, I'll write an updated post.

Tuesday, March 28, 2017

I haven't had a Doctor C appointment in over a year, but I always make it a point to draft a full write-up of my appointment because (a) I want to remember what Dr. C said, and (b) I know there is significant interest from a certain subset of other patients about what Dr. C is recommending.

Unfortunately I'm having a bad health day with brain inflammation and peripheral neuropathy, which makes it difficult to type. For that reason, I'm going to do an abbreviated summary of my 50 minute appointment rather than a full write-up. I will try to supplement this post with a more complete write-up if/when I can.

As many people who follow Dr. C's work know, Dr. C is a strong proponent of his proprietary immune-modulating supplement called Equilibrant. His recommended regimens often include taking Equilibrant in addition to one or two other immune modulating drugs or supplements. With each additional drug/supplement he tries, he finds that a certain % of his patients respond to it. Those patients continue to take that drug/supplement, while Dr. C moves on to find something that will help the others.

The latest is a more highly absorbable form of the antioxidant bioflavinoid called "quercetin"--this time in the form of dihydroquercetin. Here is the exact brand and dose that he recommends. In addition to its anti-inflammatory properties, it helps push Th2 dominant immune systems back toward Th1 and tends to calm overactive mast cells. (This was the first time I had heard Dr. Chia talk about mast cells.) I decided I'm going to give it a try.

Friday, March 17, 2017

My last update was in January, right after I'd learned that I have an active Epstein Bar Virus (EBV) infection (positive IgM antibodies) again. My doctor put me back on a prescription of Valacylovir to deal with the infection. It's difficult to say whether I am still experiencing the symptoms of EBV or not because my baseline health isn't so great anyway. I am scheduled to have another blood test on Wednesday, so I should know if I still have an active EBV infection by early April when the results come back.
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The bigger story with me is the my shortness of breath (SOB) symptom has finally abated somewhat. ("Shortness of breath" can be a little bit of a misnomer with ME patients. When you say you have SOB to a doctor, sometimes they think you're referring to hyperventilation. It's nothing like that. If anything, the breathing feels shallow and slow, and no matter how deep of a breath you take, it doesn't seem to satisfy the feeling of air hunger.)

SOB was always a symptom of mine ever since I came down with ME in 2011. But something seemed to happen in about September of 2015. I don't know what caused it, but suddenly SOB became a dominant symptom. I had it every day and, on some days, the hunger for air became so intense that it would become difficult to concentrate on other things.

It started to return to "normal" again in about October of 2016--and by "normal" I mean, I still have the symptoms intermittently, but they are not as intense as they were during the year from September 2015 to October 2016. And the post-nasal drip that almost always accompanied the SOB flares isn't really there any more.

As always, it's difficult to determine what caused this improvement because I changed a number of treatments all around the same time. I went back on Equilibrant and another immune modulating supplemental called ImmunoStim, after being off of both for about a year and a half. This is my best guess for what caused the SOB to improve again.

Another possibility is that I stopped taking probiotics in late summer, 2016. Then in the Fall, I found a hypoallergenic brand of probiotics which avoids strains of probiotics that are known to trigger histamines. I started taking that brand instead.

Another possibility is that my diet for a while had grown to include a very significant proportion of nuts, particularly cashews: Cashew butter, cashew milk, raw cashews, Lära bars (which are cashew based.) Then I read about lectins and how cashews are high in lectins. I'm not necessarily convinced that lectins are problematic in the human diet, and I've never read about any connections between lectins and SOB, but I decided to eliminate cashews for a while. I did this also in the Fall of 2016, so it's difficult to determine which of these factors helped improve my SOB.

I also started taking Vitamin D3 (5000-10,000 IU's per day) for a while in the Fall of 2016, but now I'm back off of the Vitamin D3 and the SOB is still improved, so I don't think it was that. I also went back on Valacyclovir in January, but the SOB had already started to improve by then.

I wish I was one of those people who had the patience to methodically experiment with only one variable at a time, but I can't seem to do it. So I may never know with certainty what was contributing to the worsening SOB, but I think most likely it was either the lack of immune modulators, the probiotics, or the cashews.

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DISCLAIMER: I am not a doctor and have no medical training. Nothing in this blog should be construed as medical advice. This blog simply recounts my personal experiences and, at times, summarizes research from other sources. I can't verify the accuracy of these other sources. Never rely on anything you read here in making your own medical decisions. Always consult a doctor.

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What is Myalgic Encephalomyelitis (ME)?

The clinical definition of ME is complicated, and the symptoms are many. It is a "multi-system disorder" that affects a person's immune system, hormones, nervous system, and energy (at the cellular level). I prefer to explain, simply, that it feels like I have the flu. Every single day. This is an oversimplification, but it's often the best way to explain it to a healthy person.

About Me

I came down with ME in June, 2011. I was diagnosed six months later. This blog tracks my progress; my successes and failures along the path to (hopefully) sustained remission.
I live with my wife and two young daughters in Southern California.